HPV related anal/rectal cancer

 Kateskins03  welcome to the group..

I was the same as you when I found out I had AC..the emotions ranged from shock..anger.devastation and shame due to the HPV element..but now it's acceptance I feel..

My oncologist has not said mine was hpv related I've just read up that 90% of AC is HPV caused..

Anyway.. I wish you all the vest thoughts and stay positive.. the treatment in the UK for me was 28 days of chemoradiation..

Day 1 was the chemo via a iv ..then radiotherapy directly afterwards.then for the remaining 27 radiotherapy .. chemo was tablet form.

The treatment does tire you out so rest as much as you can.. stay moisture down below.. around week 4 I started to feel my skin breaking up..so mostly I went commando from that point until about 3 weeks post treatment..

I'm 9 weeks post treatment now and almost back to normal..

Stay kind to yourself and reach out to this group if you have any concerns.. they really did help me through some dark times xx

Hi Kateskin, 

I remember that feeling, I was told in January I had SCC of the anal canal and it was a shock to say the least!  I am now just over three weeks post treatment so there is light at the end of the tunnel. 
I started showing side effects about 4 weeks in to treatment but your radiation team should provide you with all the creams and pain relief you need. Everyone is here to support you so do reach out, this forum is a godsend! 
Like Squeak said, rest as much as you can (I still am, I’m in bed most days but I know it will start to get better) and don’t be afraid to ask for help. 
I wish you the best of luck

Sarah xx

Hi Kateskins03,

Welcome to the forum, although I'm sorry to hear about your diagnosis. I too am in the States, and my treatment was 28 days of radiotherapy plus two rounds of chemo--the first round of chemo was delivered during the first week of radiation and the second round closer to the end of radiation therapy. Chemo involved two drugs that were delivered through a port--one of which I received via pump over four days. I'm not sure what exact chemo regimen you will receive as some people get some of the chemo orally instead of via infusion (particularly in the UK).

It's not an easy treatment, but it is effective, and you've come to the right place to get information and support. This forum has been a godsend for me. Like SarahLoo, I am about 3 weeks post-treatment and am still in the recovery stage.

Hang in there during the period before treatment. I remember having similar feelings to yours when I received the diagnosis and waited for treatment to begin. For many, the uncertainty changes once treatment begins. I'm not sure if it's because you're finally on the way to treating the cancer or if the regimen of daily trips to the treatment center gets your mind focussed on what's immediately before you. Whatever the case, for many of us, the emotional aspect of the diagnosis improves once treatment begins.

I'm sending you all my best wishes, and if you have any questions, please reach out. There is a lot of experience on this forum, and we are happy to help with shopping advice for treatment or any other questions. Xx

Hi Kateskins03 & another warm welcome from me to our little corner of the MacMillan Online Community although  I’m really sorry to hear of your recent diagnosis. 

It really is a rollercoaster of emotions isn’t it? Like you I thought my number was up when I first received my diagnosis, once I had my diagnostic scan results & had a chat with my colorectal surgeon I began to believe that I was going to have a life after this diagnosis. 

I joined this community & received incredible support from those that had gone before me, those that had recently been through treatment & some that were further down the line & back living their lives, which was so encouraging. I hope you find the same. 

A huge proportion of anal cancers are HPV related, I’m not aware if mine was or not, I asked the question & was told the hospital that I was treated at doesn’t test biopsies etc., for HPV as it doesn’t change the treatment or outcomes. I would have still liked to have known though. 

It’s a huge positive that your scans show no spread. 

Wishing you the very best of luck for your oncology appointment on the 1st of May, hopefully once you’ve a treatment plan in place you’ll begin to feel a little more in control as many of us have. 

If you’ve any questions at all please just ask, no question is too personal we’re pretty used to talking about our rear ends & toilet habits so nothing is taboo here. 

Nicola 

Hi Kateskin03,

Welcome to the forum although I’m sorry about your diagnosis. 
It’s a tough one to take in and understand totally about the feelings of your world falling apart on hearing the news. 
it’s particularly hard when you haven’t yet seen your oncologist and got your treatment plan.

I was diagnosed last August with SCC , HPV related and remember feeling devastated, terrified and ashamed. I had no idea what would happen next.

I had chemo radiotherapy which finished mid November and the 3 month scan showed no evidence of the tumour.

It’s great that you have found the forum as it’s an absolute mine of helpful information, support and practical advice so don’t hold back about absolutely anything you need to know. It’s also a safe space to bring any feelings as we all ‘get it’.

 I know treatment protocols are slightly different in the States but the pathway is similar.

Sending hugs x